trying to make sense of my life – and lose some weight

Takotsubo Cardiomyopathy – WHAT?

by Cherie Renae on November 12, 2014

Right after my last post, I suffered an episode of Broken Heart Syndrome. It’s not an emotional condition, but a physical one that mimics a heart attack. I had crushing chest pain radiating into my left arm, plus excruciating pain in my right jaw that was as painful as my chest. (When I went to the hospital, I discovered that right jaw pain is common enough to be a check-the-box item on the ER heart attack list.)

The official name is Takotsubo cardiomyopathy. The cause is not infarction, but a bulging of the left ventricular apex with hypercontraction of the left ventricle. This causes a misshaping of the heart that resembles an octopus trap, called ‘tako tsubo’ in Japan, where the condition was first noted.

The cause is not definitively known, but it’s usually a one-time occurrence in response to acute stress. It’s hypothesized that a large jolt of adrenaline in resonse to a highly stressful event stuns or shocks the heart. It’s most common in post-menopausal women (over 90% of the cases, in fact) whose heart protective levels of estrogen have waned.

The good news is that there is rarely heart damage as a result of the episode, and recovery is usually 100% after a few weeks recuperation.

The bad news is, medical personnel are unfamiliar with the condition. Why? Perhaps because it affects women. Perhaps because it affects OLD women. Perhaps because it was first diagnosed in the 1990’s, and doctors haven’t kept up with new medicine.

The ER doctor rolled her eyes when I asked if takotsubo cardiomyopathy was a possible diagnosis. (Bryan first suggested it. It was part of his medical training in the Army, because front-line troops are a large part of the other 10% who suffer an episode.) She clearly had never heard of it.

Plus, she was offended that I was taking an active voice in my own care. I run into that a lot. In the 1990’s, a nurse injected me – over my objections – with a substance to which I am deathly allergic. Afterward, I refused to pay any part of the hospital bill, including the very costly resuscitation. Not surprisingly, they were more than happy to acquiese, once I told them I wouldn’t sue if they did.

Back to the present. The doctor’s ignorance affected my care, because once it was determined that I hadn’t suffered an infarction (even thought I’d clearly suffered SOME type of heart event) she sent me home. It took almost 3 weeks for the cardiologist to work me into his busy schedule, by which time, according to the Mayo Clinic and other sources, most symptoms would have vanished (they had) and the heart returned to its normal shape.

I can’t help thinking that if I had been male, they would have found an earlier appointment. The cardiologist never even suggested takotsubo cardiomyopathy as a possibility. It was only after I brought it up that he ordered tests – which, I pointed out, would likely be inconclusive more than a month after the fact. Indeed. It wound up being a diagnosis of exclusion rather than a prognosis based on evidence.

Rant over about the poor state of medical care in America. (But we can’t have SOCIALIZED medicine. Because people might have to wait.) Rant truly over now. The moral of this story is: take an ACTIVE role in your health care. Don’t depend solely upon medical personnel. They are not all-knowing. They can and will miss important things about YOUR health.

But definitive diagnosis vs. diagnosis by elimination isn’t the point. The point is, what am I going to do about the ridiculous stress levels that led to the event? Stay tuned. I’ll talk about that in my next post.